Educate, Advocate & Change Your Ways: Living with PAD

By Jon Caswell

AT AGE 53, Elizabeth Beard thought she was just seriously out of shape — after all it had been years since she’d exercised, not to mention 35 years of smoking.

Having recently remarried and moved from rural Texas, she was making her first visit to a new primary care doctor. “Knowing the importance of preventative care and remaining compliant on all of my medications, finding a new primary care physician was a priority for me when moving to a new city,” she said. At the end of her new-patient visit, the doctor asked if she had any other concerns. “I told him that I had quit smoking a few months before and was attempting a walking program, but every time I walked, my feet were going numb and my calves were seizing up. I could walk for a few minutes then would have to stop and wait for the pain to ease and then start again.”

He asked her to take off her shoes and listened to her feet with a stethoscope and searched for a pulse with his fingers. He told her he could barely feel a pulse in either foot. “He said he thought that due to my history of smoking and my extensive family history of heart disease that I was probably experiencing intermittent claudication,” she said.

This was the first of several new terms Elizabeth would learn. To be certain that it was intermittent claudication, he sent her for an ankle-brachial index, another new term. “It came back severely abnormal,” she said. Following additional tests and consultations with a surgeon and cardiologist, she learned that her abdominal aorta and both femoral arteries were 80 percent to 90 percent blocked. This is where she learned her diagnosis, another new term, severe peripheral artery disease (PAD). “With such severe blockages, they recommended immediate bi-femoral aortic bypass surgery; otherwise I could lose one or both legs.”

A little anatomy: The aorta is the main artery (about an inch wide) that carries blood away from your heart to the rest of your body. After the blood leaves the heart through the aortic valve, it travels through the aorta, which makes a cane-shaped curve and connects with other major arteries to deliver oxygen-rich blood to the brain, muscles and other cells. In the upper body, it is called the thoracic aorta; below that is the abdominal aorta, which delivers blood to the femoral arteries in each leg.

“The purpose of the surgery, he said, was to save my legs, and quite possibly my life.”

Of course, the newlyweds were shocked at the diagnosis. Neither had ever heard of any of these maladies before, and the situation was presented as extremely serious. “The surgeon told us that it was a very dangerous operation,” she said. “He asked if we had a will, but we’d only been married four months. It is very hard to discuss end-of-life wishes when you are just beginning a marriage. They wanted to schedule the surgery right away, but I asked for a one-week delay for my oldest son’s wedding.”

Elizabeth has the genes for heart disease. She lost her parents 11 months apart in 2004 and 2005: her father to heart failure and her mother to a hemorrhagic stroke after four years of vascular dementia. Both had undergone open-heart surgery in their younger years, as had her older brother who is now deceased. Her younger brother has undergone two stent operations. One was last year after a near fatal STEMI (heart attack).

Elizabeth had to be tested for coronary artery disease (CAD), which often co-occurs with PAD. If they found CAD, she would have to have a coronary bypass before undergoing the aortobifemoral bypass, which involved both the abdominal aorta and both femoral arteries. Fortunately, she did not have CAD.

“It was a horrendous surgery” she said. “I was cut from my breast bone to my pubic bone plus two incisions at the top of each leg. They literally have to remove your organs and lay them to the side so they can work on your aorta and then place them back. The surgery took approximately seven hours. I have had surgery many times in my life for other conditions, and there is no comparison to the pain of the recovery from this one. If they told me I had to undergo it again, I would more than likely say no or look to other, newer options.”

The vascular surgeon told her and husband, Stephen, that she would be “like new,” but that is not how it turned out. “We assumed I would have no more pain and be able to do what I wanted,” she said. “After the surgery I still had leg pain and then there were additional issues created by the surgery itself due to nerve damage. My cardiologist eventually told me that I would never be much better than before the surgery. The purpose of the surgery, he said, was to save my legs, and quite possibly my life.”

This news devastated her as she contemplated the possibility of living life as an invalid. Her quality of life has been severely affected. She can no longer walk more than short distances nor stand for very long. Stairs are always a challenge. Both heat and cold affect her. “I have had to pass on so many things that before my illness I would have done without thinking,” she said. “I cry many times because it is overwhelming to me. It has taken me a long time to come to grips with the reality of my condition and its limitations.”

But in the four years since her diagnosis and surgery, Elizabeth’s attitude toward her health has completely changed. Though she works from home as before, she makes a point of not being sedentary, and she has continued not to smoke. She bought an activity tracker and every hour gets up from her desk and walks in place for 250 steps — “one song on the playlist.” Her goal is to walk 1.5 hours at least three times a week — broken up into 15- or 30-minute segments. “I purchased my own treadmill after my diagnosis, knowing walking was my treatment. I try to walk 30 minutes before work, 30 minutes at lunch and 30 minutes after work. There are days when I am unable to walk at all because of the pain, but this is my goal. It took me four years to build to that,” she said.

In addition to incorporating activity into her life, Elizabeth has also changed her diet. “That has been a gradual process,” she said. “Little by little I gave up sugar. I rarely eat red meat anymore. Mostly chicken, fish and turkey, low sodium, and lots of vegetables and fruits. We rarely eat out anymore because we made cooking fun. We put on our favorite music; drink some red wine and slice and dice! We’ve learned how to use spices and herbs just by trial and error.” And the results are great: for the first time in 15 years, her cholesterol and blood pressure are normal. “I feel my lifestyle healing me.”

“There is no easy fix. You have to decide first that you want to live.”

“The biggest lesson I’ve learned is that you have to find what works for you. For instance, portion control was my biggest challenge, so we now only use nine-inch plates,” she said. “I am still overweight, but I try not to stress about it. I didn’t get this way overnight, and I won’t lose it overnight. It’s the effort to change that matters.”

Elizabeth has gotten serious about tracing her heart-disease genealogy. On her father’s side, she has gone back five generations. “With the help of a cousin and using ancestry.com, I found that all of my paternal grandparents died of cardiovascular disease in one form or another,” she said. “I have not started my mom’s yet — but it probably looks similar.”

She cautions that it is not enough to just know your family history. “I knew my family had heart problems but never once related it to my own life. People have to be educated on what that means for their life and I think that education should start early,” she said. She sees that in how her daughter-in-law is raising her grandson. “She parents completely opposite of what I did with my two sons. She breastfeeds him and is introducing him to fresh vegetables and fruits. She’s very into a healthy lifestyle from the start because she knows the history of our family and her own.”

Lifestyle change requires an attitude shift as much as behavior change. “There is no easy fix. You have to decide first that you want to live. It is a slow and never-ending process if you do it right. There is no magic pill to make weight come off,” she said. “When it gets down to it, you have to develop mental grit. You have to quit making excuses and feeling sorry for yourself. The rewards will come, and then it is so worth it. I could not walk to my mailbox and back four years ago — now I can walk 10,000 steps a day. I still walk in pain, but it is easier. In my case, walking is the only treatment for PAD that works.”

Her advice to others with a new PAD diagnosis? “Educate yourself and your doctors on your disease. Advocate for yourself, because many physicians do not even have PAD on their radar,” she said. “Most of all, you must make the lifestyle changes like quitting smoking and beginning a walking program. You will never get better if you don’t. The one thing that keeps me going is knowing that if I had not been diagnosed, I would have more than likely faced amputation of one or both legs. I would say to weigh your treatment options carefully because there are so many new things they are doing now in vascular surgery. It really is exciting.”

Elizabeth has been volunteering with the American Heart Association since 2015. She says it fills a need in her to help. She has joined Go Red For Women and has found a niche for reaching out to others through her PAD blog on the Support Network. “The #GoRedGetFit group is awesome for motivation and support. I highly recommend anyone that is a survivor or has a family history of cardiovascular disease to join that group,” she said.

“When I had my bypass surgery a gentleman from the American Heart Association came to see me and left me some literature. He was so funny and let me know that no matter what, there was life after bypass surgery. I told him that I used to laugh when I was a smoker and say that I wasn’t going to quit because we were all going to die of something anyway. He said, ‘Yes, but some of us don’t die, we have bypass surgery and are left to live with the pain.’ I have never forgotten that, and it has motivated me to educate people about PAD.”

A personal message from Elizabeth:

What is PAD?

Peripheral arterial disease (PAD — pronounced P.A.D.) is a narrowing of the peripheral arteries to the legs, stomach, arms and head — most commonly in the arteries of the legs. PAD, like coronary artery disease (CAD), is caused by atherosclerosis — you may have heard it called “hardening of the arteries” — that narrows and blocks arteries in various critical regions of the body.

Sometimes PAD is the first warning of atherosclerosis throughout your arteries, putting your whole circulatory system, including your heart and brain, at risk. Fatty deposits also increase the odds of blood clots that block blood supply and cause tissue death as well as vascular inflammation.

PAD can restrict circulation to the limbs, organs and brain and damage them. Left untreated, the tissue can become infected or die, a condition called gangrene, and in the worst cases, may result in the need for amputation.

PAD affects about 8.5 million Americans age 40 and older. It becomes more common as we age. People with PAD have a higher risk of coronary artery disease, heart attack or stroke. The sooner it is diagnosed and treated, the better — but that can be a challenge because many people either don’t have symptoms, or think the symptoms they’re having are something else entirely — like Elizabeth thinking her leg pain was the result of being entirely out of shape.

Symptoms of PAD

Elizabeth had classic PAD symptoms — pain in the lower extremities, muscle cramping in the hips, thighs or calves when walking, climbing stairs or exercising. This pain goes away in a few minutes after you stop exercising. This is because working muscles need more blood flow; resting muscles can get by with less. The “crampy” pain (called “intermittent claudication”), when caused by PAD, is the muscles’ way of warning the body that they aren’t getting enough blood to meet the increased demand of exercise.

Other symptoms of PAD include:

Leg pain that does not go away when you stop exercising

Foot or toe wounds that won’t heal or heal very slowly

Gangrene, or dead tissue

A marked decrease in the temperature of your lower leg or foot particularly compared to the other leg or to the rest of your body

Understanding leg pain

Many people dismiss leg pain as a normal sign of aging — “It’s arthritis, sciatica or just ‘stiffness.’” Keep these distinctions in mind: PAD leg pain occurs in the muscles, not the joints or the sciatic nerve. Those with diabetes might confuse PAD pain with a neuropathy, a common diabetic symptom that is a burning or discomfort of the feet or thighs.

If you’re having any kind of recurring pain, talk to your healthcare professional and describe the pain as accurately as you can.

Risk Factors for PAD

Just like in coronary artery disease, some PAD risk factors can’t be controlled — aging, personal or family history of PAD, cardiovascular disease or stroke. However, you can control these risk factors:

Cigarette smoking — You can stop smoking. Smoking is a major risk factor for PAD. Smokers may have four times the risk of PAD than nonsmokers. Avoid secondhand smoke.

Diabetes mellitus — You can manage diabetes and blood sugar levels. Having diabetes puts you at greater risk of developing PAD and other cardiovascular diseases.

How is PAD diagnosed?

PAD may go undiagnosed by healthcare professionals because so many people either aren’t having symptoms, or attribute PAD symptoms to something else. Despite a cryptogenic stroke in 2002 at 42 and 10 years of TIAs, “my neurologist told me my feet hurt because I had plantar fasciitis or that I had some type of neuropathy in my feet,” Elizabeth said. “The TIAs completely ceased when I stopped smoking in 2012.”

PAD diagnosis begins with a physical examination. Your healthcare provider will ask about symptoms you may be experiencing. They will check for weak pulses in the legs. Depending on what your healthcare provider finds during the examination, an ankle-brachial index (ABI) may be administered. The results of the ABI may warrant further tests.

How is PAD treated?

Treatment for PAD focuses on reducing symptoms and preventing it from progressing further. In most cases, lifestyle changes, physical activity and claudication medications are enough to slow the progression or even reverse the symptoms of PAD.

Physical Activity

Regular physical activity is often an effective treatment for PAD symptoms. Often doctors recommend a program of supervised exercise training, also known as cardiac rehabilitation. As did Elizabeth, you may have to begin slowly, but simple walking regimens, leg exercises and treadmill exercise programs can ease symptoms.

When PAD causes pain while walking, the exercise program takes that into account — alternating activity and rest in intervals to build up the amount of time you can walk before the pain sets in. Other exercises such as upper body ergometry (using a machine built for you to pedal with your arms), cycling and pain-free or low-intensity walking can also improve walking and function.

It’s best if this exercise program is undertaken in a rehabilitation center and monitored. But if that isn’t possible, your healthcare professional may recommend a structured community or home-based program.

Smoking Cessation

Tobacco smoke is a major risk factor for PAD and for heart attack and stroke. Stop smoking and avoid secondhand smoke. It will help to slow the progression of PAD and other heart-related diseases.

The American Heart Association/American Stroke Association Support Network is here for patients and their families to come together and share their experiences, insights and tips and support for one another. Join the Support Network for free today.

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